Friday, January 9, 2009

Pediatric Ophthamologist

I was unable to get an appointment with Dr Rhame's first recommendation, Dr McCash, as they do not accept our insurance. Dr McCash's office also gave me the names of:

Dr. Shatz (210.704.4100) located downtown
Dr. Cohen(210.697.2020) located in Stone Oak

Dr Rhame had also given me the name of Dr. Mark Berry. Dr Berry's office could not see us til February in his Stone Oak office. So, I called Dr Cohen. We have an appointment on Wednesday, January 14th at 8.40 am.

Thursday, January 8, 2009

Visit with Dr. Rhame

Today during Johnathon's well-child care check up, Dr. Rhame started watching Ryan and then started examining his eyes. After chatting for a few minutes, he asked if there were any updates on Ryan.

I told him about our appointment with Dr. Fierro and the chromosome microarray test. We discussed that it will probably be typical to do have lots of tests and maybe even some re-tests till we determine what is going on with Ryan. He gave me the name of 2 pediatric opthamologists: Dr. McCash and Dr. Mark Berry, and asked me to get Ryan in to see one of them.

Monday, January 5, 2009

Developmental Pediatrician

We just got back from an appointment with Ryan's developmental Pediatrician, Dr. Mario Fierro, and Monical Tagle the CPNP.

Ryan is 5 months old. (He will be 23 weeks tomorrow.) He weighed 13 pounds 6 ounces and measured 23 3/4 inches. He is still below the chart for weight and in the lower 5th percentile for his height. They are however pleased with his growth since he is still going up. They were also pleased that he is able to lift his head up a little, and that he can kind of hold it up. (He's still a bit of a bobble head though.) They also liked that the dystonia (stiffness) in his lower body has relaxed a bit. They were happy to see that his pupils do change in size even though they are smaller than they should be. They think he is seeing some objects, but suspect that he does not have full vision.

They are still concerned that he lacks the ability to hold his head up. He also still has too much stiffness in his upper body, and especially holds his right arm in an abnormal manner. They also noted that his breasts are not symmetrical. And, they are concerned that the way his eyes kind of bounce around at times may be small seizures, and anticipate that the Neurologist will order an extended EEG.

They continue to watch his feeding habits, but feel a bit more relaxed about them as he is gaining weight and is not choking with every feeding. They suggested suctioning his nose before each feeding and after each feeding. Apparently, this will help if it's just that he is unable to clear congestion in his airway.

They have asked/recommended that the Occupational Therapist meet with him weekly instead of twice each month. They would also like a Physical Therapist to start meeting with him weekly.

They also recommended that we work on his visual tracking in dim light or in the black box. And, that we continue to work on tummy time, but perhaps make it in very small increments ... like 1-2 minutes. This will help to tone his core muscles. They also would like us to have him sit up on our laps more with our hands sandwiching him for support, and lightly supporting the back of his neck so that it doesn't drop backwards.

Tonight they had us go to the hospital to get blood drawn for a "Chromosome MicroArray". Dwight & I thought this had happened at the hospital; however, apparently they only ordered a blood test that checked for the most common chromosome disorders. (I feel a little frustrated about that as it is not what we were told was being done nor what we requested to be done.) The blood draw was not fun. They had a really tough time getting 3 cc's of blood from him. They were supposed to draw 5, but had to withdraw the needle as nothing else was coming. They called the lab and were told that 3 would be enough. I hope they're right. The test results should be back in 2 weeks. Just after we see the Neurologist.

They also debated doing an MRI. However, they would like the Neurologist to see him first. An MRI requires an infant being sedated, which has its risks. Additionally, the brain changes so dramatically between now and 1 year that if they can postpone it, they'd prefer to wait. Waiting will result in a better diagnostic picture and less risks with the anesthesia. So, we'll see whether the Neurologist thinks the benefits outweigh the risks.

Dr Fierro feels that the "dysmorphic appearances" are more indicative of a chromosomal abnormality than of Cerebral Palsy. Bottom line though is that we have no more answers than we did before, and we need to do more therapy and more testing.

It's been a very long day, but I'm so thankful for little Ryan. I'm thankful that he is not an irritable baby, and for all the progress that he is making. I'm also really thankful for all these specialists.

Humpty Dumpty

Recently I have been reviewing books on early childhood education. I've read them before, but I find I need to refresh my memory with each child. One of the books I was reading talked about nursery rhymes and their educational value.

Today I was at the Developmental Pediatrician's office with Ryan. The Dr and the Nurse Practitioner had really ticked him off by putting him on his tummy. Then they left to write up test orders. I was trying to calm him by "singing" nursery rhymes. I was slowly pacing the dimly lit room holding Ryan and "singing" Humpty Dumpty. You remember it ...

Humpty Dumpty sat on the wall
Humpty Dumpty had a great fall
All the King's horses, and all the King's men
Couldn't put Humpty together again.

I had repeated it a few times, and then it occurred to me...

Humpty Dumpty sat on the wall
Humpty Dumpty had a great fall
All the King's horses, and all the King's men
Couldn't put Humpty together again.
...But Heavenly Father could

I know it doesn't rhyme perfectly, but isn't it a great thought! Kings and men might not be able to do all things, but Heavenly Father can.